Every day of her adult life, Jan Hoover Johnson of Savannah has worried about the effect her death will have on her youngest brother.

Even though she is only 61.

Her concern is one of many shared by siblings of people with special needs.

Jan’s youngest brother, Scotty, has Down syndrome. He was born 52 years ago, before the current advances in treating and mainstreaming of people with the disorder.

As a result, Scotty did not have the opportunity to advance as children born with Down syndrome have today.

Scotty, who lives in a Savannah group home, lacks the ability to express himself verbally and has no ability to advocate for himself or be self-sufficient. As a result, Jan and her two younger siblings have made sure he is well cared for since their parents’ death. But the very real worry is what will happen if they die first.

“A sibling of someone with special needs can’t live a life without thinking of the consequences of their own death on their sibling,” Jan said.

Jan will share her story at Sibshop, a two-day workshop organized by the Matthew Reardon Center for Autism in Savannah at The Chatham Academy that focuses on the concerns of siblings of people with special needs.

Siblings of children with special needs face various challenges during childhood. The normal children are called “shadow siblings” because the child with disabilities occupies the center of the family.

Then, in adulthood, the concerns become those associated with being a caretaker or advocate for the loved one with special needs.

Sibshops for kids, parents, teachers

One of the upcoming Savannah Sibshops sessions is a fun, interactive workshop for kids ages 8-13 who have a sibling with special needs. It will be from 10 a.m. to 2 p.m. Feb. 16 at The Chatham Academy.

Cost of the workshop is $10 and includes all materials and lunch. There are a limited amount of scholarships available on a first come, first serve basis.

This is an extra special opportunity since this workshop will be led by Don Meyer, the founder of Sibshops. This will serve as a demonstration workshop for professionals who are learning to plan and facilitate their own Sibshops.

Other workshops include a facilitator training on Feb. 15 to educate parents, service providers and others about siblings’ ever-changing issues across the life-span. It will be from 9 a.m. to 3:30 p.m. at The Chatham Academy.

Leighton Jordan, the 2012 Miss Georgia, also has a sibling with special needs and is expected to speak at the training. Her platform — the “Sibling Support Project,” which is an organization that focuses on the sibling of special needs — aims to help siblings like her. She believes sometimes such siblings don’t get the attention and support needed

That love manifested itself early on in Scotty’s life. Jan was 10 years old when he was born. She embraced her little brother as though he were her baby, caring for him, she admits now, to a fault.

“I catered to him, which was probably not good for him,” Jan said. “I carried that child on my hip until he weighed 104 pounds.”

Early on, Jan’s strong, perceptive mother, Mary Hoover, saw this tendency in Jan to become preoccupied with helping Scotty. When Jan was just a young mother, Mary Hoover pulled Jan aside and told her she never wanted Scotty to be a burden after her and her husband’s deaths. She wanted Jan to understand that she believed Scotty was her responsibility, not Jan’s. So Mary and Jan worked to get Scotty into a quality group home, where Scotty is happy.

Still, Jan fears what might happen to Scotty without a family member to advocate for him.

“Being a sibling of someone with special needs does affect you greatly,” Jan said. “I don’t want Scotty to be in this world without any family.”